Pediatric Neurology Appointment

I apologize for not being more clear about Nadia’s back to school start date. Bless your souls who inquired about how her first day back went yesterday. I do appreciate you all checking in. Nadia will be returning for the first time this afternoon, in a few hours actually. And I’m terrified. What if she has a panic attack? What if she refuses pants since she knows we aren’t going somewhere fun, like Target, to look at toys? I think I have PTSD over her epic meltdowns, as I’m seriously a mess over her going back. I’m as scared for her as I am for myself. I don’t want the stress of preschool to undo all the great progress we have made over the past two months… So yes, it’s today.

Yesterday Eric and I took Nadia to see a pediatric neurologist, a referral from our PANS specialist. We were there over two hours, so much medical talk, good thing Eric was there! I’m not sure I can say exactly how a neurologist treats PANS, my understanding is that it’s more to rule out any other brain abnormalities. There isn’t really one, or any definitive tests to prove a patient has PANS, therefore we need to rule out every other possible condition that could cause similar symptoms.

If you remember back to Nadia’s premature birth, it’s customary to do an ultrasound of the brain on the seventh day of life to look for brain bleeds. They found one in Nadia’s brain and thus performed an MRI that same day, which ended up showing a portion of her brain hadn’t received oxygen at some point. They couldn’t pinpoint when, they assumed a week before or right after her birth, if I remember correctly. A pediatric neurologist did follow Nadia for the first two years of her life, but as her development was on track compared to other preemies her age, they released Nadia from their care, believing the brain had healed itself. Baby brains, especially preemies, as they are at an even earlier stage of development, are extremely ‘pliable’ so to speak. Damage is often able to heal itself by forming new and different pathways. Or so the doctors told us!

So fast forward to now… Given Nadia’s neurologic history, they want to do another MRI with contrast to see how her brain looks now… They want to make sure that the symptoms we currently believe to be PANS aren’t better explained by some other condition. Honestly though, I’m not sure what we expect to see on this MRI. Inflammation in the brain, the biggest sign of PANS, doesn’t necessarily show up on MRIs, but again, we aren’t trying to rule PANS in, rather rule out anything else.

On the drive home we ran through McDonalds. Nadia was so worn out she fell asleep mid-fry!

I did ask the teachers about the chair. Apparently there is such a chair, that is set a bit away from the area used for circle time. It’s only for those children who are being EXTREMELY disruptive I’m told. Nadia has never needed to sit in this chair… Perhaps though she is afraid of having to? I don’t know… She is so easily embarrassed if corrected in front of others… I guess we’ll just see how she does today. Pray I can actually get her there!

I’m not a crier 

I’m usually not a crier. But I was watching a recorded episode of Nashville last night, and a particular scene really got to me…

Now I know I didn’t purposely do anything to cause Nora and Nadia’s premature births and ongoing related issues… But I’d be lying if I said I didn’t feel quite guilty. I mean, my God, Nora had bacterial meningitis and sepsis as a preemie, two separate episodes. When they told us they said, I’m so sorry, as if she was already dead! I’m honestly shocked she’s doing so well. We still have many follow-up appointments, which reminds me, we need another hearing test for her, as she’s at-risk for hearing loss for several more years yet, I think until she’s five maybe. And Nadia, every time I look at her and will her to crawl or make a babbling noise I’m reminded of her brain bleed.

There is the rational side of it all… But then there is the side who wishes she could go back. To beg for the cerclage, or do more research on my own, or rest more during both my pregnancies. I don’t know, anything to change a 29 and 30 week delivery. And then I think of our frozen embryo. How do we give that little boy or girl a chance? Is it irresponsible for me to attempt another pregnancy? What if I delivered at 24 weeks next time? How would I live with the guilt of raising a possible special-needs child knowing my body was the cause?

I think back to the month we started our first round of IVF, how scared I was of the process… And here now, with two beautiful girls… The situation may be different, but the fear remains.

Speech Therapy Evaluation

I left the speech therapy evaluation today very discouraged. They want to see Nadia weekly for now, which doesn’t really surprise me. But I guess I did expect to have a better understanding of the process and goals after our appointment today, but I don’t.

The hour-long appointment was mostly spent as an interview, the therapist questioning me based on Nadia’s skills. I didn’t feel like I had a lot to say, other than, she squeals and cries, and that’s about it. We know she can hear based on her last hearing test before she was released from the NICU, but the therapist recommended another, which is fine, I’m totally not opposed to such, but I find it odd they want Iowa City to do the test… Again, fine, we are there all the time, but odd to me. Don’t they do hearing tests here??

The speech therapist seemed young, I’m not sure how much experience she has… She talked a lot to Nadia, to which Nadia basically just stared at her, or screamed and looked to me for comfort. And when I say talked to Nadia, I mean she made over-exaggerated sounds emphasizing the use of her mouth and lips, lots of motions with her hands, lots of expression, etc.

Our homework for the next week until we see her again:

  • Speak as much to Nadia as possible using lots of expression, lots of mouth movements, etc.
  • Mimic Nadia’s sounds back to her, giving her a chance to ‘take her turn’ to aid in the teaching of back and forth communication
  • Work to teach Nadia the signs for ‘more’ and ‘all done’
  • Repeat basic sounds, such as da, ma, and ba to Nadia over and over and over

I’m not at all opposed to teaching Nadia some simple sign language, as even Nora knows some basic baby signs, but I guess even the mention of such scared me. It made me wonder if the therapist fears Nadia will never speak… She did say that Nadia clearly has a voice, as she uses it to cry and such… I don’t know, just brought back a lot of fears for me, all the horrors of the brain bleed and lack of oxygen at birth. Is this all my fault? I’m so busy with Nora, Nadia doesn’t get nearly the attention Nora did at this age. Do I not work with Nadia enough? What am I doing wrong that Nadia needs speech and physical therapy, and Nora will probably start feeding therapy soon? I feel like everything is hitting me at once. I thought I was so lucky with my two preemies, that they were doing so well… I don’t want that to change. And all these appointments are wearing on me. The speech and physical therapy needs to be on different days, as they wear out Nadia and thus she doesn’t perform well at the second appointment of the day. And I can’t take Nora along, so once she starts feeding therapy that will be three appointments added to our list a week. I guess the bright side is I don’t work, otherwise I’d constantly be requesting time off.

Nadia’s 9 month check-up

This morning was Nadia’s 9-month check-up with our regular pediatrician in town. No shots, thank you God! I did leave a bit discouraged though…

Last week we had Nadia’s neonatology high-risk check-up in Iowa City, basically a visit where they check milestones, fine and gross motor, social, physical, etc. It all looks like playing with her to me, but I know it’s a lot more than that! I left that appointment feeling great. There were a couple of areas where she wasn’t performing at 100%, but they evaluate based on an age range, that visit being 6-9 months. Her adjusted age as of today is 7 months 15 days, so they said she technically had several more weeks to meet all the milestones they were testing for before they would be concerned.

So today, our pediatrician was more concerned, specifically regarding:

  • Nadia makes no attempts to crawl, basically just lies on her belly and cries rather than attempting to push herself up on her hands or knees.
  • The only sounds Nadia makes are the traditional high-pitched squeals babies make. She does not make other babbling sounds, such as da, ba, etc.

Our pediatrician is referring us to physical and speech therapy. I don’t know the details yet, as those providers are supposed to contact me to set appointments. I don’t want to be that mom who’s in denial that there is a problem with their child. But I do think its a bit early to start therapy. But… what the heck do I know? Perhaps the sooner the better. Iowa City always tells me that preemies are known to be a bit delayed, even for their adjusted age. Isn’t it possible Nadia will catch up on her own, without therapy? Nora did everything early, so this is all new to me. And perhaps I’m just terrified to learn there really is an issue with Nadia’s brain… remember her brain bleed in the NICU, and the spot on her brain they found on the MRI that showed lack of oxygen at some point shortly before birth?

Last week Nadia did also see ophthalmology in Iowa City. Thankfully her optic nerves, retinas, and vision is perfect! We don’t need to return to them for 12 months!

She’s Two!!!

Nora is two. How did that happen?? We decided not to do a party, although mostly for the wrong reasons, mainly Eric’s mother,  but more on that later, or another day. So instead, since Eric had a few days off work we took the girls to Madison, WI for a few days. We wanted a location that wasn’t too far of a drive, a place that had a few things for kids… I think Nora had fun, we went to the zoo one day and Nora was fascinated by the giraffes, monkeys, and an ass who was surely a horse to her, the children’s museum another day, and on Nora’s birthday went to this adorable kid’s cafe for lunch, Ella’s Deli. It was a fast few days, but very enjoyable. The girls even slept rather well in the hotel, all things considered.

So it’s Tuesday, Eric is back to work, it’s only 10:40am and Nora is already down for a nap. Nora had her two-year well-child visit yesterday and got a shot… I’m not sure if that’s why she is super tired and cranky today or what… Maybe just the terrible twos already! The house is a disaster, there is tons of laundry, I need to work out, Nadia wants to eat every three hours round the clock, so I’m tired, for some reason my lower back is killing me, and tomorrow are Nora’s two-year pictures, and I have yet to finalize her outfits. I ordered a few things, but haven’t tried any of it on her yet.

Speaking of Nadia eating every three hours… Apparently she is not allergic to the protein in cow’s milk, as for about the past two weeks we’ve been feeding her my frozen breast milk and she seems to be doing okay. We’re still putting MiraLax into her bottles as our doctor suggested, and wow, so many blow-outs from breast milk. I actually liked her on formula better for that reason, not a single diaper that exploded onto her clothing. Now though, I’m feeling even worse that I stopped pumping. So bad I considered starting again. I mentioned re-lactation on here before, right? Eric thinks it’s a crazy idea, and that I would regret it after I started, the time involved… I don’t know. Still considering it… And, I have several cases of really expensive Neocate that she doesn’t need either. You have to order it online and I doubt it’s returnable, so ugh. I mean, I guess I could keep feeding it to her after I’m out of frozen breast milk, but seems a bit of a waste of money when I could feed her any old formula. Oh wait, back to my finance days, sunk cost

I really miss writing… I’d write an entry everyday if I had the time. Not that anyone would want to read… I guess I see this blog as something I’ll want to look back on years from now, like a diary, and there are obviously lots of life events missing when I don’t write for months or weeks at a time. Maybe I’ll try to find some time tonight to catch up and write a bit more. Maybe.

One more random thought before I go. Nadia still isn’t rolling from her back to her front although she easily gets from her stomach to her back. She’s almost 7 months actual, 4 1/2 months adjusted. Should I be concerned? When did your babies roll? I’m just terrified that her brain bleed and back of oxygen at birth will delay her.

Here are a few pictures from our trip to Madison and Nora’s birthday celebration with my mom and step-dad.